I don’t need sympathy, I need change.” My daughter has been brutalised by a system which she trusted to heal her. Still we have to fight. For nutrition, fluids. To keep a child alive. Sarah’s bravery means others like me can start to lift our heads above the parapet. #longcovidkids #ME #pwME

#MEmomentOfSilence Pass it on! 💙

My daughter needs TPN ongoing. She has x 3 colon transit studies that demonstrate very abnormal bowels. An anal manometry that demonstrates sphincter does not work. Transit studies that show her small bowel transit is rapid. A gut alimetry that shows neuromuscular damage.

🧸 A drug for celiac disease was found safe and effective in treating a post-COVID syndrome in children 💊 Researchers found that SARS-CoV-2 and influenza can awaken metastatic breast cancer cells in lungs 🏡 An at-home clinical trial program This week's #LongCOVID research: bit.ly/46I9xVz

for this #longcovidawarenessday I want to say thank you to my pediatric and adult patients that are making me a better doctor, and better human and a better carer. I’ll give my best to give everything back to you to make you feel better

A new blog post for #LongCovidAwarenessDay (today) describes my forthcoming edited book ‘Long COVID and Society’ simplysociology.wordpress.com/2025/03/15/l...

Don’t miss this important seminar, which will challenge the myth that Long COVID is a ‘functional’ condition rather than biological www.kirby.unsw.edu.au/events/long-...

MDPI: “Serum Spike Protein Persistence Post COVID Is Not Associated with ME/CFS” “this study provides further evidence for serum spike persistence in a subset of individuals after SARS-CoV-2 but found no association with ME/CFS or symptom severity” www.mdpi.com/2077-0383/14...

My daughter has Covid again. I don’t have words for that. She usually doesn’t dream anymore. But last night, she told me, she dreamt of swimming in the river at Brunswick Heads again; and I wonder in how many ways my heart can splinter. #longcovidkids

No teenage parties. No thrill of the first tastes of adult freedoms. No friends who feel like the centre of the earth for you. That one class at school you just fall in love with. That changes who you think you’ll become.

What the fuck is this? AI qualifying as a prescriber?

This goes here: www.sciencedirect.com/science/arti...

I am tired of trying to educate those who are tasked to care for my child about her illness. I am tired of watching them destroy her body, and soul. I am tired of watching her incredible resilience and fortitude and force to survive go without recognition. #longcovidkids

Nursing Times: 'Nurse hopes to ‘turn claps into cash’ for colleagues with long Covid' 'A nurse is embarking on a nearly 200-mile-long walk in aid of healthcare workers with long Covid' www.nursingtimes.net/nurse-wellbe...

Where I think it’s all headed for ME and ME-like diseases: mitochondrial transfer. Affected cell lines may receive donations from less affected ones. Treatments may focus on providing reinforcements for those poor, de-energized little beans. 🫘 translational-medicine.biomedcentral.com/articles/10....

COVID-19 outbreaks in Australian residential aged care facilities: 2 January 2025 🔹Active cases: 1,725 (+254) 🔹Active outbreaks: 287 (+52) 🔹Residents: 1,270 (+181) 🔹Staff: 455 (+73) 🔹Reported deaths in 2025: 27 (+27) www.health.gov.au/sites/defaul...

DHSC published its response to the consultation on its interim Plan for ME this morning. A lot has happened since that consultation ended (October 2023), especially the growing numbers of pw #LongCovid whose presentations meet UK ME/cfs diagnostic criteria. www.gov.uk/government/c...

you all ready to end the narrative about the psychological nature of #longcovid in children and being caused by lockdowns?

Please share widely - the really important detail so often gets overlooked.

Thank you @news.sky.com and Sarah-Jane for following this neglect. You are revealing how #VerySevereME has no advocates but unpaid family carers & 1 geneticist. BACME does not speak for us, nor MEA, nor Action for ME. They do not listen to us either. Thank you for giving us a voice.

#12waysofERASE Words Matter Everything we say can have downstream consequences. Using the wrong words can have lasting effects for years on a personal and wider level. The #LongCOVID community have shared experiences where others simply haven’t understood this.

My #longcovidkid, now 16, has been a in a high acuity, isolation room, in the same hospital for 365 days with no single night out; tube/PN feed, various stomas and suffering severe autonomic dysfunction. Can’t walk, eat, drink, perform basic bodily functions. This is long covid/ME.

Potentially exciting news: longcovidtheanswers.com/monoclnal-an...

This is a @davetuller1.bsky.social appreciation post. Every time there is a badly conducted #LongCOVID, #MECFS or IACC paper being published, he is there organizing a cogent response. I cannot tell you how essential he is to academics and clinicians battling misinformation in the field.

PEM is the gift that just keeps on…well, taking. Every day. So it’s an appropriate theme for an advent calendar. Let’s see if I can remember to do it. Anyway, let’s call this Day 1 of the PEM Advent Calendar. Today: the ICC-ME. pubmed.ncbi.nlm.nih.gov/21777306/

Says it all.

🇬🇧 UK You’re currently debating assisted dying legislation, not this - an overview of what Covid induced chronic illness is going to cost the state. They are, however, deeply, and horrifyingly related. #longcovid #pwme #longcovidkids journals.sagepub.com/doi/10.1177/...

Blood vessel wall (endothelial) inflammation as a key to multi-organ complications of Covid and #LongCovid @science.org science.org/doi/10.1126/...

Out today, an explainer on our recent perspective piece. theconversation.com/long-covid-a...

globalnews.ca/news/1052900... This kind of structural violent negligence treats people so poorly at some point they just want an end to their suffering. It’s abhorrent and it’s not about choice. They aren’t given the option of basic care.

@rthonwesstreeting.bsky.social thank you for approaching the #AssistedDyingBill from a pragmatic stance. Now is NOT the time for state sanctioned killing. After 14 years of strangling UK citizens rights - without exception - imagine what the next Tory government will do. Please speak to this today.

@wellcomecollection.bsky.social Living with #ME wellcomecollection.org/stories/livi...

What do all these diseases have in common? • Tuberculosis • Multiple Sclerosis • Epilepsy • Cancer • Parkinsons Disease • Lyme Disease There were times when the medical profession tried to claim they were psychosomatic. Don’t be that doctor. Educate yourself. #LongCovid #MedSky

Perhaps they should also listen to those from the vulnerable Disability Group. My partner's daughter is high functioning ASD. This is crucial to her. I rarely, if ever, exposure my personal life on SM. But this is really terrible. Please re-skeet and sign🙏🏻 www.change.org/p/keep-music...

At last!! Justin Webb on BBC Radio 4 Today considers Dr Natalie McDermott's symptoms represent a post infection disease that has been known about for decades and will not be understood by CBT. With the numbers (he says, post pandemic) perhaps now is the time to do more research. 08:35am-ish

🔊🔊 BOOM🔊🔊 This 👇🏻👇🏻👇🏻👇🏻👇🏻💥

Evil doers !

I’ve noticed over time that usually only one of the people in a given conversation I have on social media about concerns I’m stigmatizing mental health disorders when I am critical of how clinicians apply the diagnostic label of FND has degrees in psychology—and that person is me. ☺️

I am watching this play out in my teen daughter. There’s no excuse for ignorance from medical professionals anymore. Too much is clear, to deny understanding.

"Post Exertional Malaise" PEM is a terrible description of how post infection diseases, like #LongCovid #Lyme #ME etc. progress if not properly managed. PEM cannot respond to mental health strategies. Maeve died from NHS & government ignorance of PEM. She was not the first, nor the last.

It says a lot about #MECFS and #LongCovid that there could not be an ME/CFS Olympics...Because if we tried to push the physical limits of our bodies like that, all the winners would simply die... New post on my blog: www.whitneydafoe.com/mecfs/?post=...

Anyone interested in #MECFS, please follow Janet Dafoe @janetdafoe.bsky.social 💙 She’s the mother of @whitneydafoe.bsky.social who suffers from extremely severe #MECFS and also the wife of the brilliant Dr. Ron Davis, a Stanford researcher tirelessly working on finding a cure for #MECFS. ⬇️

Can any Blue Sky LC researchers help me out please? Desperately looking to source pre-pandemic covid naive biobanked blood and plasma samples from healthy children aged 8-18 (but predominantly 11-18) to act as historical control for a study? Turning out to be trickier than expected.UK based.Thx! x

Ostriches have nothing on us…..

Suck it, tech bros.

This is such an important video breaking down the harmful myths around ME and doing the vital job of explaining what it actually is. Please share. #disability #MECFS

If doctors all learn about the Krebs cycle as a matter of course, why are so many disbelievers of (or unable to comprehend) very severe ME/Long Covid? Or is it all just too challenging for the majority, particularly in a high stress, low capacity environment? #longvcovidkids #ME #pwme?

All of this ‼️‼️‼️ Thank you @brendancrabb.bsky.social Saying the important bits out loud 👇🏻👇🏻👇🏻👇🏻👇🏻👇🏻